Once Upon a Time………Part 2

Running alongside Boo’s mounting behavioural problems at this age we started having very excessive medical issues with her. Nothing horrendous, but lots of things that didn’t make much sense and I couldn’t heal. We noticed that her stomach was always bloated yet the rest of her was skinny like a little bird – she met her centiles (despite dropping from 98th to 50th) so no one was worried.

Stomach problems

She had suddenly started to get daily stomach cramps which would have her screaming and huddled in a ball – because she often had protein in her wee she was diagnosed with many many UTI’s however every time we got the lab results back it was clear of UTI. I lost count of how many times i had to rush to A&E with my baby girl screaming in pain with her stomach; on one particular occasion she screamed for 3 hours on the trot. So many nights me and hubby spent with her curled in a ball on the bathroom floor just stroking her hair while she cried because I didn’t know what to do.

Tiredness

She had started to look bad, my fresh faced baby girl had started to look excessively pale and often had dark bruises under her eyes. She was tired all the time, acting like she was over tired from about an hour after getting up. this was the main cause of so many problems because by 10am she was ready for bed but unwilling to have a nap (unless we drove for miles). She would spin in circles until she fell to the floor, she would scream blue murder at the smallest issue and she started stimming, a motion normally seen in autistic children.

Other Symptoms

Boo caught every single virus going – hand, foot and mouth, oh we’ve had that twice! Measles – yup! Chicken Pox – twice! Scarlet Fever – yup! And about 96 different viral infections of no name. Even her body hurt, she would scream in pain with her knees and would just fall over even if she was standing still. Her hair was falling out in clumps, enough that poor hubby constantly had to attack the hoover with a pen knife to clear the blockages, and her hair would hang limply around her face. My blonde baby faced girl had gone and she had started to resemble a child from a horror movie.

Hypoglycemia

At night Boo suffered from what we would class as hypoglycemic episodes, though it should be said this was not diagnosed by a doctor and one paediatrician got very upset with us using the terminology to describe this symptom. Whatever the correct term, Boo would wake in the middle of the night, her whole body shaking uncontrollably, she would appear unaware of her surroundings as if she didn’t know where she was and would start screaming at me and hubby for no reason. She would then literally fight us, kicking us, punching us and thrashing in our arms until we managed to get some food into her mouth. 5 chocolate buttons usually worked a treat. It was at this time we worried about diabetes – but several dip tests later and that didn’t check out either. We were at a loss.

Effects on the Family

We found we lost touch with many friends because we simply couldn’t handle the stress of going out. The meltdowns and generally crazy behaviour were too much, I couldn’t handle the looks we got and the unsolicited comments. Even in Poundland an old lady approached me and said she thought Boo “had those problems” as she tapped the side of her head as rude people do when they are referring to mental health issues. However for short periods of time she could hold it together if she was kept in constant amusement and then meltdown later at home when she was comfortable or she couldn’t hold on to it anymore. This had the negative effect that it was hard for anyone to understand how life was like for us as a family.

If you tell people your toddler is badly behaved, they think you are crazy or just cant cope – all toddlers are little sods aren’t they? I started to worry that maybe I just didn’t know how to parent and that maybe she was just a really naughty child and I had done something wrong in raising her – not enough tummy time? Too much messy play? Or maybe she just didn’t like being my daughter. All these things and many more crossed my mind every day while I trudged from doctor to doctor trying to find out if I could ‘fix’ my baby girl.

We went to GP after GP with one theory after another until one day when we had to admit we feared she might have ADHD. I called the health visitor in. She was amazing, she listened, she didn’t think I was crazy or a crap mum (phew) and she agreed to keep coming back for visits until we figured it out. It was on one of these visits that I showed her a couple of pictures taken a day apart, one where Boo looked radiant with a beaming smile and rosy cheeks and the other, taken the very next day where her eyes were badly sunken in with black bruises underneath, pale skin and very lank thin hair – they could have been two different children. The health visitor mentioned the only time she had seen this type of look before was in a coeliac girl and so our path down diagnosis began.